LymeNet Flash: If you have POTS, Please Take a Look at This ! I am def. on to Something !!!

This is topic If you have POTS, Please Take a Look at This ! I am def. on to Something !!! in forum Medical Questions at LymeNet Flash.

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Posted by lymetwister (Member # 19590) on :

I have noticed that when I Herx, my POTS symptoms also get worse. My POTS is basically untreated and attempts to treat it have failed. However, I have recently learned that I have Hyperadrenergic POTS with MCAD (Mast Cell Activation Disorder).

Antihistamines help with MCAD and perhaps why Benadryl helps with Herx symptoms, just a theory.

From my research, I am learning that Cerebral Hypoperfusion is caused from the POTS and not Lyme even though the Lyme is causing the POTS.

I am seeing a world renowned Autonomic Nervous System Dr. on Monday for 3 hr. appt. who specializes in this stuff.

A woman by the name of Kimberly put this site together. Take a look at her Symptom list for her Hyper adrenergic POTS. Once treated, she was much better. Did she have Lyme too ? Hard to say, but I'd bet she did.

Her Symptom list before POTS treatment (Sound Familiar ?):

rapid heart beat, high blood pressure, syncope, near syncope, shortness of breath, chest pressure, heart in throat feeling, constant headache/migraine, feeling shaky, hand tremors, nausea, vomiting, Irritable Bowl Syndrome (IBS), weakness, excessive sweating, heat surges, anxiety, periods of bad depression, anger, difficulty communicating, forming thoughts, overactive or no appetite, early satiety, red burning face, extreme fatigue, couldn�t handle good or bad stress, slurred speech, light headed, balance problems, excessive yawning, easily frustrated, painful eye muscles, watery eyes, blurred vision, tongue is permanently on the left side of mouth and heat intolerance.

https://sites.google.com/site/hyperadrenergicpots/my-story

Much more information on the link above.

Best,

Gary

Posted by Al (Member # 9420) on :

Interesting and accurate.

Underlying cause not identified

Posted by canefan17 (Member # 22149) on :

Random question Gary - have you ever chelated metals?

Posted by nonna05 (Member # 33557) on :

Sorry, !!!! [Roll Eyes]

Whatis POTS?

Thanks Nonna

Posted by ZachsMom (Member # 33860) on :

Wow, that list of symptoms... my 22 year old son has so MANY of those...was diagnosed with POTS 3 years ago but just got a positive IgG Western Blot. It's all so intermingled. But bottom line is: very sick kid!!!

Posted by ZachsMom (Member # 33860) on :

Nonna05, POTS is postural orthostatic tachycardia syndrome, an autonomatic nervous system disorder.

Posted by lymetwister (Member # 19590) on :

Keep in mind, this is the Hyperadrenergic Type of POTS.

The difference between Hyperadrenergic and just plain old POTS is that when one stands or even sits, massive amounts of adrenaline are released creating the crazy Anxiety and Adrenaline type surges raising Blood Pressure. With this form, most people dont' pass out when standing. BP usually goes up.

In addition, with this form, the Sympathetic Nervous system is overstimulated in so many ways that it's more then anxiety that people experience from what I'm reading. Hard to sort it all out.

The biggest thing that I am finding is the 40-60% of blood is shunted away from the brain. So, the awful head symptoms are often relieved or lessened by Laying down. Even flat, symptoms can continue.

As difficult as it may be, outside of Cardiac meds and other meds to help symptoms, Excercise and at least 4 liters of water per day plus adding Salt to your diet in the area of up to 10gm per day really helps these folks.

I got on my treadmill and walked 1.5 miles yesterday. I was very hard. In addition, I upped my water intake and took in 2gm of Sea Salt. It paid off almost immediately after the walk.

I will now incorporate the walking daily into my daily routine and work my way up as tolerated.

I will keep you posted after my Dr. appt. Monday.

Posted by lymetwister (Member # 19590) on :

Again, and forgot to mention in my last post, if you have these symptoms and Bendaryl helps you, the Mast Cell Activation Disorder (MCAD/MCAS) can be another factor in all of this.

It's like an allergic reaction inside the bloodstream. You don't have to break out into hives to have it. It can present as just more symptoms.

Again, I'm thinking this is why some suggest Benadryl for Herxing b/c with MCAD, Antihistamines are one of the biggest treatments.

Lots of Info. here...

Posted by seekhelp (Member # 15067) on :

Gary, I have the symptom pattern you describe. When UPRIGHT, things go to hell. Not a lowered BP, but elevates. Lying down is all that helps. [Frown]

Interesting. Good luck.

Posted by nonna05 (Member # 33557) on :

I read this and just remembered last October ,when in hospital, the doc there said I should see an Autotomic doc. Didn't know what that was/is. I've been so busy fighting this that I put it off... Now I'm On disability and just got Medicare..Which was news to me cause I had great insurance through my husbands old job.. The reason I bring this up here is that it seems to me these responders know a little more about different stuff... Do I have a chance with any good doc in this field,and others with the change///Still don't know if I need it . But based on what any of you have been through , is there a chance?/ Not sure if this belongs here. [bow]

Nonna

Bottom line: in God's hands